A Guide to Ocular Inflammatory Disease

Dear Teachers and Parents,

Uveitis (U'VE-I-TIS) is a rare, serious medical condition that affects vision. When a child has uveitis, it is important for teachers and for parents to learn about the illness and about its potential effect on the child. This online edition of Uveitis: A Guide for Teachers and Parents contains the same information that appears in the published version. We have written this material to provide teachers and parents with information about uveitis and to suggest some guidelines for adapting the classroom and school setting. If you have a question, or would care to comment on our efforts, please post a note on this online forum.

Next | Index | Top | www.ed.gov/offices/OSERS/Policy/IDEA/regs.html). Special education considerations in the United States include such things as support for modification of assignments or the environment, or for specialized equipment. If the child needs a special computer screen or program, or a scribe, this could be funded under special education.

Children with uveitis whose vision does not interfere with school work may be eligible for accommodations under section 504 of the American with Disabilities Act (Website: www.hhs.gov/ocr/504.html).

GETTING STARTED

Please share this booklet with other school staff so everyone who has contact with this student is aware of his or her abilities and needs. We have found that the parents of children with uveitis are eager to work with school staff to ensure that their children achieve maximum potential, both academically and socially. We recommend, before or soon after the school year begins, that a meeting be held with the student's parents. Go over the material in this booklet together. Make a plan. Invite any other school staff members who see your student on a regular basis. This may include the principal, PE teacher, vision specialist, and school nurse or bus driver. And, please, ask the parents to alert you to any problems that could affect the child's performance and attitude. Throughout the school year, inform parents of changes in the child's physical and emotional health, and urge them to communicate regularly with you, too.

WHAT IS UVEITIS?

Uveitis (U'VE-I-TIS) is a rare, serious medical condition that affects vision. Uveitis is inflammation deep inside the eye, in the middle layer of the eye that carries the blood supply to other parts of the eye. This middle layer of the eye is called the "uvea" (or uveal tract). Uveitis is like having inflammation from a burn, but inside the eye. Inflammation occurring inside the eye is a medical emergency. If not treated, vision loss will occur.

If you have never heard of uveitis, you are not alone. Uveitis occurs so rarely that it is unlikely your school has had even one other student with this illness. In the United States, for example, it is estimated that 11,500 children have uveitis and that 2,250 new cases are identified every year. Despite how rare it is, uveitis is the third leading cause of preventable blindness in the developed world.

Anatomy

Uvea (u've'a) is the Latin word for grape. If you could see the uveal tract, it might remind you of a grape that has had its outer skin peeled away. The uvea is brown and round, with a "stem" formed by the optic nerve. "Itis" is the Latin suffix for inflammation. Put the two words together: uve + itis = "uveitis". The uvea surrounds the eye like a tunic (coat). The visible part of the uvea is the iris.

The uveal tract has three main parts. The iris gives the eye its characteristic color. It changes shape to control the amount of light entering the eye. The ciliary body makes fluid for the inside of the eye. The choroid is very vascular and provides the blood supply for the eye. Inflammation affecting any of these parts of the eye is called uveitis.

WHO GETS UVEITIS?

Uveitis is the third leading cause of preventable blindness in the developed world. Despite this, it is a rare disease. Uveitis can develop at any age. It is found in all races and occurs worldwide. It is not contagious. Patients with uveitis starting before the age of 16 years represent 5% to 10% of the all cases of uveitis.

Uveitis has an estimated prevalence of about 38 cases per 100,000 population, and an incidence of 15 cases per 100,000 population. 2,359,242 people in the world are estimated to have the disorder. In the United States it is estimated that uveitis afflicts 109,000 people and that 43,000 new cases are diagnosed each year. It is estimated that, at any one time, about 11,500 children in the United States will have uveitis and that 2,250 new cases are identified every year.

WHAT ARE THE SYMPTOMS OF UVEITIS?

Uveitis symptoms include pain or redness in the eye, sensitivity to light (photophobia), blurred or diminished vision, problems with "glare", seeing black spots (called "floaters"), and sometimes, abnormal eye movement or alignment. Children with uveitis are at increased risk for developing glaucoma and cataract. Some children with uveitis will become blind. Most children with uveitis will require years of medical treatment in an effort to save their vision. Roughly half of the children with uveitis will not have symptoms to warn them of disease activity. In this instance, the uveitis is usually discovered after there has been irreversible vision loss caused by damage to the retina or optic nerve.

HOW IS VISION AFFECTED BY UVEITIS?

Vision will always be affected when there is inflammation inside the eye. How vision will be affected depends on how severe the inflammation is, how long the inflammation has gone uncontrolled, whether the student is having a "flare" up of symptoms (whether the illness is active or in remission), whether complications such as glaucoma or cataract have developed, and what treatment the child is receiving. As you might imagine, it can get pretty complicated.

Vision may fluctuate from relatively "normal" to very poor. Children with uveitis may be able to read with little assistance one month and then may need adaptive text the next. Or, the visual problems may be relatively stable and predictable. Glare can be a big problem inside and out of doors. Communication with the child's family is crucial to understanding how your particular student is doing and what specific adaptations will need to be implemented.

EDUCATIONAL ENTITLEMENTS AND UVEITIS

Children with uveitis whose vision impairment interferes with their ability to do school work qualify for special education considerations under the Individuals with Disabilities Education Act (IDEA). (Website: uveitis. It is really hard to go to school and have something that no one has ever heard of! I think all of my teachers so far have understood about my eyes. They didn't get mad if I would miss class for an eye appointment or anything. I hate it though that none of your friends or any of your classmates know what your talking about. I mean they don't know what you have to go through everyday with having to put drops in and then eye appointments. It gets kinda of hard. Like when I explain that I have Uveitis no one has ever heard of it. Well I think that is a great idea!" ~ Michelle

Hi Michelle -

I agree with what you said about friends not getting it. Right now my two closest friends are both very smart people so they are able to understand what I'm explaining to them, and to empathize. Friends I've had in the past just didn't really comprehend and would sometimes ask "So are your eyes all better now?" Others would never ask me how my eyes were, as if I didn't even have a problem. I don't know which one bothers me more. Probably the ones who didn't ask me anything at all. ~Em

Classroom Exercise:

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Overview

Uveitis can have a significant impact on the child's experience at school. In this section we make recommendations about adaptations that may assist students whose vision has been affected by uveitis. These suggestions are equally valuable to employ at school and in the home.

These are general recommendations. An individual educational plan will need to be developed to reflects the student's specific needs. Consider implementing any adaptations prior to a period when the child may be feeling ill. This will give the student the best chance of continuing his or her routines under difficult circumstances.

Some students with uveitis have additional, non-vision related health problems that may also require consideration.

Things to keep in mind

Physical complaints are an important clue about disease activity and can aid in diagnosis. Please report any observations in this regard to parents.

Students with uveitis will have to miss class in order to go to medical appointments. Sometimes these appointments will be urgent and will interfere with school and and family routines. The urgency may also be upsetting to the student.

Homework and other assignments may need to be adjusted during a "flare" of the illness so that the child's eyes can rest.

Children will often need help to take prescribed medications during school hours

Kids hate being different than their classmates. This can lead some children not to report difficulties they are having.

Students whose vision is affected may miss subtle nonverbal cues (body language/facial expression) used for classroom management. Teachers may want to consider combining these messages with an auditory prompt if the student with uveitis is missing them.

The brothers and sisters of children who have uveitis may also need educational considerations and support.

Initiate Special Education proceedings as indicated

Reach out for help. Involve the school’s vision specialist early on. Parents will know a lot about what to do. Participate yourself in our online support community.

What you may observe in the classroom

The extent to which vision is affected by uveitis is different for each child. The complications of uveitis can be obvious, as in the case of severe vision loss, or subtle, as in the instance of a student whose vision has been preserved by treatment with immunosuppressive chemotherapy. Vision may fluctuate widely and be affected by the illness and, sometimes, but the medications used to treat it For example, eye drops make vision blurry.

Students being treated with immunosuppressive chemotherapy may be fatigued or less focused cognitively on some days. Some children experience significant eye pain (photophobia) during illness flares, others do not. Children can feel unwell in a wide variety of ways during a "flare" or during certain phases of treatment. And they can feel very distressed if changes in physical appearance.

Children generally adjust to all of this in some proportion to how the adults around them are handling things. But, kids have questions too. They worry, sometimes, about going blind. They get upset when the adults around them are upset. And, they worry about fitting in at school and especially about "being different".

Knowing that a teacher is "tuned in" to these fluctuations and is someone to whom the student can turn is the single most valuable resource a student can have at school.

Visually Demanding Tasks

Many students with uveitis will have difficulty accomplishing visually demanding tasks. These are some examples of visually demanding tasks: reading, taking class notes, producing written assignments, using a computer, art projects, playing music, playing board games, looking at a chalk board or electronically projected material, going to a library, playing table games, riding a school bus, reading street signs, going on field trips, and playing baseball or other sports. I am sure that you will be able to think of many other examples at your school.

The school vision specialist (or Vision Rehabilitation Center specialist) can help you determine what materials will benefit your student.

Use Large Print material. Generally, font sizes may need to range from 14 to 20 point.

Seat your student so that light falls onto the work surface from behind (over the shoulder)

For some children, especially in second and third grades, the print itself is large enough, but there may be too much printing on a page, causing 'visual clutter', and increasing eye strain and eye fatigue.

Decrease competing background on written materials (make them less "busy")

Decrease the amount of print on a page

Most class room materials can easily be enlarged with any good photocopier

Allow the child to hold the book as close or as far away as necessary, even to tilt the book to see better. The child will learn appropriate adaptations as to what is most comfortable to see well. None of these things will 'hurt' his or her vision

Use different color "manipulatives" or color coding to help the student find materials or papers more easily

Encourage the student to take frequent breaks from reading or close work

Assess rather it may be necessary to excuse students periodically from homework if there are significant symptoms

Use books on tape, and encourage the student to use them, especially for book reports and projects. These are a beneficial tool to encourage listening skills and listening comprehension. Books on tape help the student to complete reading assignments or prepare for book reports or projects

Dealing with Glare

Many children with uveitis experience an increased sensitivity to glare. Glare can be caused by sunlight, commonly used lighting sources, and reflections from schoolroom surfaces. Reducing glare will improve the student's ability to see what is on the page or board. Common situations that produce the glare are: fluorescent lighting, having to stare into a bright light while trying to see detail; projectors, cloudy or snowy days, very bright sunshine, oncoming headlights.

The adaptations listed below for reducing glare may also help the student with symptoms of photophobia (light sensitivity). Light sensitivity is a common problem that children experience, especially during times of flare, or if medications are needed to dilate the pupils. When the student is experiencing photophobia, pain can be significant and vision decreases when too much light floods the retina.

Test different kinds and levels of lighting to determine what is most comfortable for your student.

Fluorescent lighting, of all available light types, produces the most glare. Turn off fluorescent lighting if possible. Full spectrum lighting is the closest to natural sunlight and the most comfortable for people with most visual pathologies. Incandescent lighting casts a yellow light. It is the most common form of light bulb, frequently used in desk or table lamps.

Seat your student so that they are not directly facing a window as the glare produced by that cold "wash out' images. Think of how your vision is reduced when driving a car directly into the setting sun.

Replace white paper with newsprint or soft green paper to reduce glare from the page. This will improve the student's ability to see what is on the page. Newsprint is generally available in schools and is inexpensive when compared with white paper.

Glasses can prescribed that filter light to reduce problems with glare. Encourage your student to experiment with colored lens ("sun glasses") and hats with brims to reduce glare from overhead and outside light.

A piece of yellow acetate over white paper can help decrease the glare from overhead lights on bright white paper

Encourage the student to take frequent breaks from close work (reading, writing, computer work) to reduce eye fatigue

Anticipate that your student may need more time than others to adjust to lighting changes, particularly when coming in from outside or when walking into bright light.

Tests, Homework, and Written Assignments

Homework and other assignments may need to be adjusted during an illness flare so that the child's eyes can be rested

Check with the family, especially prior to standardized tests, to determine what adaptations will be needed for your student. Untimed tests and examinations are perfectly appropriate for many students with uveitis.

Include homework assignments that can be read to the student, or questions that can be done orally at home.

Allow written assignments to be done using "narration", where the student narrates to the parent, who writes down what the student says verbatim. Later, the student can re-copy and make revisions.

ADAPTING THE PLAYGROUND

Children with uveitis should be encouraged to participate in playground and athletic activities but must, at all times, take special precautions to protect their eyes from injury. One parent's solution to her daughter's refusal to wear protective eye gear during soccer was to buy the whole team the same eye gear. Now, all of the kids want to have this "equipment"

The student with uveitis should ALWAYS wear shatter proof eye glasses or athletic eye shields during playground activity or athletic games where sticks or balls are used or where hard contact is expected.

Injury to an eye can cause the disease to get worse or cause permanent damage to vision.

UV coated sun glasses should be worn on sunny days when outdoors [more].

If the student's vision is fluctuating widely, or vision is impaired by glare, students should suspend participation in hard contact sports and not drive a car.

DO YOU HAVE QUESTIONS?

We would be pleased to try to answer questions you may have about uveitis after reading this material, or to direct you to an appropriate resource. To ask a question, please point your web browser to the "Ask Dr. Foster" forum on www.Uveitis.org. Post your question. You will get a reply.

ACKNOWLEDGMENTS

Our online support community has a parent forum. The suggestion to develop this material was proposed there. The parent-members of the forum provided, through their online discussion, valuable insights and suggestions about content. Members of the Uveitis/OID Support Group in Boston coordinated the project and provided subject expertise (list).

ADDITIONAL CONTRIBUTORS

Elizabeth Irvin, PhD Frances B. Foster, RN, MS, CS

Uveitis/OID Support Group, Cambridge, MA USA

Sharon Ray, ScD, OTR/L

Assistant Professor of Occupational Therapy (Pediatrics) Tufts University Boston School of Occupational Therapy

Mary Anne Roberto

Vision Specialist and Parent-Member (Pennsylvania), Uveitis/OID Support Group

Em

andMichelleare student-member of the Uveitis/OID Support Group.Em attends South Side High School in New York and Michelle is a student at Triton High School in Minnesota

Emily Herzlin

is an artist on Long Island. Uveitis Eye(back cover)

Audrey Melanson

is a Medical Photographer at the Massachusetts Eye and Ear Infirmary. Slit lamp photo.

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TRANSLATING THIS FILE INTO OTHER LANGUAGES

We recommend the use of professional services to translate medical and support information on this website. Non-English speaking readers may find that these free online programs are of some assistance in an initial review of this material

We would appreciate learning about translations of this material that we could consider, after review, for posting on this website. If you have such material and are interested in providing it free of charge as a public service, please contact Dr. Foster for details.

VISION REHABILITATION RESOURCES

RESOURCES FOR YOUR STUDENTS

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WEB

This website gives practical suggestions, appropriate for parents and teachers, for supporting the development of the child with vision challenges. It has material written in English and in Spanish about developing your child's vision, and a guide for parents of infants and young children with vision impairment. It goes through school age and the the suggestions are practical and easily implemented.

COPYRIGHT STATEMENT

This material is copyrighted by the Ocular Immunology and Uveitis Foundation, C. Stephen Foster, M.D., President. Readers are encouraged to redistribute this material to other individuals for noncommercial use and free of charge, provided that the text, HTML codes, and this notice remain intact and unaltered in any way. Uveitis: A Guide for Teachers and Parents may not be resold, reprinted or redistributed for commercial use or compensation of any kind without prior written permission from the author.

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